Managing a Rare Disease on Campus

What patients and caregivers say students should know.

By Patrick Mairs
22 Aug 2019

Going off to college is a time of transition for any teen or young adult. For those living with a rare disease, the move to a university campus can be especially daunting. Many patients share concerns about continuing care away from home and managing a rare disease while balancing schoolwork.

Shannon McDonnell knows those worries well. She was diagnosed with a primary immunodeficiency disease just before her first year. McDonnell advises patients preparing for college to talk to with their doctor at home about how best to explain their condition to healthcare providers who will be treating them at school and may not be as familiar with their rare disease. She adds that it’s also worth mentioning a rare condition to school officials to ensure the proper support is in place.

“Talk with disability services so that you have everything you need,” McDonnell said.

That advice is echoed by Annette Gregory, whose daughter, Baylee, is a student living with a primary immunodeficiency at the University of Oregon. Before leaving home, she suggests students with a rare disease have their doctor share their medical information with the school.

“If you’re continuing care at the university, make sure your medical records are sent to the college from your doctor,” Gregory says.

She also says it’s a good idea for patients and their parents make sure there is a specialty pharmacy near campus that can accommodate their needs.

The main priority of a successful student is keeping up in the classroom, which can be difficult while dealing with a rare condition. That’s why McDonnell says it’s important that students with a rare disease be open about their condition with their classroom instructors as soon as the semester starts.

“Be transparent with your professors,” she says. “It's better for them to know about your rare disease sooner rather than later in case you have a setback.”

For more advice on having a successful college experience while managing a rare disease, check out this story from biotechnology leader CSL Behring: “The Big Move to College.”

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